Baycrest Centre - Episode 22

Defy Dementia Episode 22: No Brain Left Behind

This episode of Defy Dementia explores the relationship between developmental disabilities and dementia. Guests Dewlyn and Anna Lobo, a daughter-mother duo who live in Ottawa, share their personal journeys as they navigate the health challenges that people with Down syndrome and their carers may experience. Then, Dr. Yona Lunsky (Centre for Addiction and Mental Health; CAMH) discusses why it’s so important for our physical and mental health to increase awareness of and fight stigmas surrounding developmental disabilities.

Episode 22: Transcript

Key messages

People with developmental disabilities are at an increased risk of dementia.
Their caregivers experience amplified risk for dementia as well.
Lifestyle risk factors for dementia affect us all, but people with developmental disabilities and their family caregivers face stigma and additional barriers.

Key actions

Engage with people with developmental disabilities: don’t make assumptions about their capacities.
Support everyone, regardless of their abilities, to make lifestyle changes to reduce their dementia risk.
Caregivers, take care of your brain health as you age.

Resources

The Connection Between Intellectual Disability and Dementia – from Dementia Solutions
Know the Signs: Dementia in Persons with I/DD – from Informing Families
Alzheimer’s and Individuals with Intellectual and Developmental Disabilities – from Alzheimer’s Association
Prevention, Screening, Diagnosis and Support for Persons with Developmental Disabilities Who Develop Dementia – from Health Quality B.C.
Promoting brain health: A national capacity-building project for aging adults with intellectual or developmental disabilities, family caregivers, and service providers – from Azrieli Adult Neurodevelopmental Centre, CAMH
Canadian Guide for Community Care and Supports for Adults with Intellectual disabilities Affected by Dementia – from Reena Foundation

Learn more about our guests

Dewlyn Lobo and Anna Lobo are a daughter and mother, respectively, who live in Ottawa. Together, they are each other’s caregivers and both are committed to an activity-centred lifestyle that is designed to boost their physical and cognitive health. Dewlyn, 37, lives with Down syndrome and is employed part-time as an office worker and web researcher at the Occupational Health and Safety office on Parliament Hill. She has also served as a teacher at support courses for people with developmental disabilities at CAMH. Anna, 72, originally worked as a nurse in Goa, India. In 2004, she answered a help wanted ad for nurses in Nunavut. She and Dewlyn moved to Rankin Inlet in 2005. Eventually they moved south to Ottawa. Anna has also served as a teacher at CAMH, speaking to classes about the wellbeing of caregivers.

Yona Lunsky, PhD, CPsych, FAAIDD, is the Scientific Director of the Azrieli Adult Neurodevelopmental Centre, Director of the Health Care Access Research and Developmental Disabilities Program (www.hcardd.ca) and a Senior Scientist at the Centre for Addiction and Mental Health (CAMH), in Toronto, Canada. She is also a Professor in the Department of Psychiatry at the Temerty Faculty of Medicine, University of Toronto; an Adjunct Scientist at ICES; and a Clinical Psychologist. She has been studying the mental and physical health of adults with developmental disabilities and their families for more than 25 years, and has published over 300 papers on this topic. She works closely with people with developmental disabilities, their families, and clinical providers to identify health care gaps and co-design innovative solutions.